In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

Saturday, August 23, 2008

Twelve days ago I posted about Chapter 6 in this series. It was the most difficult chapter to absorb, at the time, but Chapter 7 has stopped me in my tracks: I've been thinking. (Then I got the cold, during which my chorus also had a performance, yadda yadda.)

Apologies for the delay. Let's resume.

This is the 7th post in a series summarizing the e-book "e-Patients: How they can help us heal healthcare." The starting post is here.

7. The Autonomous Patient and the Reconfiguration of Medical Knowledge

We must redefine the patient's role to emphasize autonomy, emancipation and self-reliance instead of passivity and dependence.—Angela Coulter

In some ways, it all comes down to who can make informed decisions, and "informed" comes down to who's got access to the information. That's what this chapter is about: the Internet has fundamentally changed who can get at information. (Hence, in the chapter title, "the reconfiguration of medical knowledge.")

The Internet also adds something that was never before possible: today we (patients in need) can talk to peers around the world whom we'd never have met, to share experiences and knowledge. In a complete inversion of the previous "knowledge/power pyramid," this sometimes means we the patients have access to knowledge that our doctors don't!

Think about that. Really think about it. I don't want to say "this changes everything," but it sure dynamites conventional wisdom about where to go if you want your life saved. Really think about that.

Plus, our ability to get at information and our ability to share it (and find new information from other patients) gives us an autonomy we've never had, forever freeing us from dependence on a single source of knowledge.

Ironically, this also reduces the historical burden on the physician to "know everything." That completes the profound reconfiguration of medical knowledge.

Topics in this chapter:

Introduction: 3 out of 4 medical episodes are handled without a clinician, and 19/20 are partly or entirely self-managed. Only 5% are managed entirely by physicians. Could it be there's more genuine capability in lay patients than we've assumed?

"In the judgment of those who really count – e-patients themselves – the most useful online information and guidance available on a given medical topic often comes from online patients (e.g., patient webmasters and e-patient groups) rather than medical professionals.

"It is these e-patients themselves – and not their clinicians – who choose the online resources they prefer. And it is they who decide when and how to use them.

The only limit, frankly, is how many of us know it's happened, and have access to the Internet (no small issue, to much of the planet's population).

The pitfalls of paternalism: "Patients were considered incapable of understanding and taking charge of medical matters. ... The model for most health care is still 'doctor knows best'... The problem with this template, apart from its essentially authoritarian nature, is that the doctor may, indeed, not know best. ... Example: It took 60 years to establish that, for many patients, a simple mastectomy is just as good as a radical one. ... But in many parts of the country, mastectomy is still often the only option women are given."

Think about that, too, if you still feel an M.D. degree guarantees greater wisdom.

And if we can't be sure MDs know best, where can we turn? That's the point: we turn to ourselves to be responsible.

We do consult our physicians, but we also gathering what info we can, and we check with our peers to see how different approaches have turned out.

Bottom line, we decide for ourselves which resources are most valuable.

The e-patient-resistant clinician: A brief section: "We have used this term to identify those health professionals who refuse to acknowledge their patients' competence or to accept their influence."

Here's a recent example from May 2008: responding to a blog post on CNN, Carol K said when she asked her doctor about a treatment, he responded "Who's got the degree here?" (btw, his diagnosis turned out to be completely wrong.)

Moving beyond medical paternalism: "Coulter proposes that patients be treated as '…responsible adults, capable of gathering and assimilating information and of learning the skills needed to provide much of their own medical care.' The clinicians' roles in 21st century healthcare will increasingly be to support their patients' own initiatives, to encourage patients to practice self-managed care, to help patients acquire the information, skills, tools, and support they need, and to serve as advisors along the way." You may want to again review "Steal These Slides."

The e-patient-receptive clinician: "When patients [can] collaborate with a non-paternalistic clinician, asking questions in their own way and communicating via e-mail when needed, actual consultation times typically do not increase. Patients are more satisfied and feel that they have spent more time with their doctors – even though, in some cases, they may spend less time interacting face-to-face." (Emphasis added.)

I know this from first-hand experience: when I've communicated with my providers before a meeting, so the agenda is pre-set, I always leave the meeting satisfied. And it gives them a chance to be more prepared.)